The support of others

How men respond to a diagnosis of penile cancer is likely to be different in each case. Whatever the response, the support of family, friends and others can be a key factor in helping men cope physically and mentally.

As the first signs of penile cancer can be small changes in the penis, it can be difficult to decide if and when it is appropriate to seek medical advice. Wives, partners, and friends were instrumental in encouraging some men to seek professional help by noticing and discussing changes.

Tim is a white male and married father of three children, all in their 20s. Tim currently works as a full time IT manager in a consultancy firm.

Did you discuss the lump with anybody else?

I mentioned it; I mentioned it to my wife. I was saying, when she was saying ‘Look, you really need to go and get your blood pressure sorted. You really need to take that seriously.’ And I said to her, at that point I said to her, ‘Well, actually, there may be something a bit more serious that I need to… need to deal with.’ And that was how the subject came up. And I took it from there. And then, and then there was obviously the point at which it became obvious to her that the, the growth was there. And so then we had to talk about it and deal with it from there.

Did she provide any encouragement to act on your fears?

Did she – I think. I think she was supportive, but I think at that point when I’d realised ok that it was perhaps prostate, but that it was something that I had to talk to the doctor about, and once I’d set things in motion. Then really, it all took care of itself from there then once I’d faced it, which it was the doctor, then the blood tests, then the results, and everything sort of flows through from there. And so, but I don’t think I could have done anything to make it go, go faster or slower from that point.

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Age at interview:

58

Sex:

Male

Age at diagnosis:

57

Background:

Jordan is a married white male with two children, both in their twenties. Jordan works as an internet trader in a small web sales company.

When did you first tell someone about the problem?

Its, well my wife saw it and I think I was, there was a bit of blood on my underpants and things like that and she wanted to know about that. So that told her, or she found out... that’s the first situation and then obviously went to the doctors and it all went on from there. Once I knew I’d got the cancer, well we, we told members of the family and not exactly where it was, but that I had, skin cancer and that needed treatment. And that’s been one of the difficulties of course, talking to friends and family and [laughs]. You know, people you know for many years and you want to tell them that you’ve got an illness and its, its needing treatment and you sort of say, ‘it’s a man’s problem,’ rather than the exact… you know details and the location. So that was one of the difficulties. And there’s a lot of my friends who have said, you know, ‘You’re a very private person. You don’t sort of wear your heart on your sleeve.’ So it’s I mean still only a few people know, exactly where it was.

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Profile Info

Age at interview:

48

Sex:

Male

Age at diagnosis:

46

Background:

Mark is a single white male with two children. Mark works as betting office manager.

Before seeking help did you discuss your symptoms with anybody else?

Certainly not family. I, bizarrely enough, the girls at work, were like my extended family. They knew I had, they knew I had a problem. Me family were completely oblivious to the fact that I had a problem. They’d noticed that I’d started…my routine had changed. We all have routines and mine had changed. We discuss it now. I was spending.. longer in the bathroom than I used. I was getting up 7 or 8 times during in the night, to go to the bathroom. and, that and a number of other things. My routine had changed, so they suspected that something was amiss. My colleagues at work... I told them that I had a problem downstairs, that I was struggling to pass, I didn’t tell them, I spared them the gory details, but I did mention that I’d been struggling, to pass water, I don’t And I used to, not make light of it, but I used to say well I don’t know what’s happened, I don’t know how this has started. But I was...I wasn’t, I wasn’t secretive. I was secretive with my immediate family but I wasn’t secretive with the girls at work. They knew there was a problem. They didn’t know what the problem was. One girl in particular who I’m very fond of, she… became very cross in saying that I really do need to go and seek some help. And I actually some time before that plucked up the courage to phone, my GP and he was on holiday. And that was because of her. And I look back now and if that, and that was, I went in on the 8th October, this was maybe the start of September. So if I’d have, if the doctor had been in. It’s just a lot of circumstances that didn’t actually gel together correctly for me. But I’d have, if I’d have, if the GP had been in then maybe things would have been different. But I didn’t discuss it with my family. I didn’t feel like I could, it’s a strange thing, I couldn’t…. People discuss, families discuss all sorts of things I know. But that wasn’t something. That’s not a subject you can broach with...well I don’t think you can sort of broach it with anybody, apart from your GP or somebody very close to you. And my friend was very close to me and she waved a finger at me once or twice to go and seek some help. And I did try, but then I didn’t until the problems on the 8th. But things may have been different if the doctor had been in but I don’t know.

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Profile Info

Age at interview:

61

Sex:

Male

Age at diagnosis:

59

Background:

Paul is a single white male, he is now retired having previously worked as a tool renovator.

How did you go about telling your friend?

Oh well. [Name] had – oh sorry – um she phoned, because she phones me regular like and I broke down on the phone because I’m quite an emotional person anyway and then she asked me what was wrong and then I said, “Well I can’t really tell you.” I said, “It’s too embarrassing,” and then [Name] said, “We’ve been friends for such a long time [Name], it doesn’t matter what it is, tell – you must tell me.” And when I said about I said, “Oh, it’s down below like,” she said, “Look I’ve had three children” you know, “don’t be embarrassed, I’m your friend.” So then I told her that I said, “I’ve got a massive tumour on my penis” and that’s more or less when she came round to my house and more or less dragged me down to the GP. She really pushed me, you know and I’ll always be grateful to her for that. I mean that’s what you call a real friend. And she was – oh God the amount of appointments I’ve had at different hospitals she was always there for me so you know – and her husband [name] he didn’t mind because I’m close member of the family, close with the family anyway so...Or even when I told her she kind of knew, she said, “You’re not going to go anywhere about this are you” and I said, “Well no,” and that’s when she really pushed me and said more or less dragged me down to the GP, like you know, it went from there then.

From noticing the first signs of penile cancer to diagnosis, treatment and aftercare, there will be many points along the way when men with penile cancer will want to share their problems (see `Telling others’). Some of the men we interviewed didn’t share their concerns about the early signs because they didn’t want to worry those close to them unnecessarily. Others were accompanied at appointments by their wife or partner or another family member, which can make it easier to discuss anxieties about what is happening to them.

Ian is a white male, married with four grown up children. Ian is a retired, self employed monumental mason.

Did you tell anybody else? Any friends or family?

No. Oh well, the wife was there when I was when the doctor said like, you know that I’d got cancer. So I think she was more upset than me [laughs]. You know, outwardly she started to cry over it but, I just said you know ‘I’ll be alright.’ You know ‘Don’t worry about it.’ So [chuckles].

Did you find it helpful that she was there?

[Exhales] I suppose in a way yeh because you share, you share the anxiety then you know. I mean if, obviously, like I say if you’d, if I’d have been younger then it would have been a different ball game. I think you know at the age I mean if I had been younger I think it’d been psychologically it would have been different, you know. That’s how I could describe it anyway [chuckles].

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Profile Info

Age at interview:

68

Sex:

Male

Age at diagnosis:

65

Background:

Frosty is a married white male with two grown up children. He is the director of a contract flooring company.

I didn’t tell the wife that I’d probably got it until it was a hundred per cent confirmed because I saw no point in worrying her and the rest of the family until we knew exactly what it was and what was going to happen and um my wife came with me to all the consultant visits and she sat inside while I was being – she didn’t go out like some wives disappear out while the husband’s being – I said, “No she can stay and be…” she was there the whole time so she knew probably, she used to ask a few questions that I wouldn’t have asked, if you know what I mean [chuckles].
So when you did break the news to your family and maybe friends, how did you go about it, how did you reveal it to them?

Well I… sorry… my wife came with me to the one and I knew that I hadn’t told her but when it was announced she was there so she found out the same time as I did. She burst into tears bless her and funnily enough, it sounds daft but the fact that I had kept it from her was a help because I knew and I was able to comfort her which was probably strange. You’d probably think it was other way, that it was me, but she was fine in a couple of minutes, the surgeon was very good.

The majority of men we spoke to experienced sympathy from people they told and sometimes received offers of support (see `Telling others’).

Visiting at home and the hospital and meeting up socially, family and friends can provide a valuable support network by allowing the man to share anxieties and worries throughout the course of his treatment. Other groups, such as religious and charitable groups, can also provide support. At times, concerns about future health can become overwhelming, dwarfing other worries such as money. This meant that some men felt that at times that they were being selfish, concerned only with themselves. Nevertheless, these men say that they are grateful for the support they have received and feel as if they could never pay it back.

Mark is a single white male with two children. Mark works as betting office manager.

It’s difficult to conduct yourself the same as you were because you’re not the same. But… you know people don’t need to know. People don’t need to know what’s the matter with you. Without friends and family, it would have been very difficult, very difficult. So I owe them more than I could ever repay them. But apart from that, things are going alright now, seemingly fit and well and looking forward to starting my reconstruction and getting myself back to something like I was.

With regard to relationships, no. I have a relationship with my brother and my sister and we are very, very close. They used to, they’d come over as often as they could but they have … things that they need to deal with as well. And…apart from that… it was, it’s funny really because you tend to forget about everything else. I am the most important thing. The world goes on, the world goes on but I just focussed on me. That was, and it’s very selfish I know, but… that was, I was the most important thing, at that particular point. And I weren’t bothered about work, I wasn’t bothered about money, I wasn’t bothered about anything. My health, I was the most important thing. If I got out of it and I could get myself back up and running again then them other things can be dealt with. But if I didn’t then they can’t be so there so there’s no, in my opinion there’s no point worrying about it. But they had, which I was surprised at, they had… some help at the hospital as well, they had people coming round if you were… But…but I’m not a God-fearing man, I’m not, although I would never take his name in vain or anything like that. But there were times when I was quite low and they used to have the padre come round and…. and I remember speaking to him. He actually came to see me on the day before my lymph glands, I had my lymph glands done. And I wasn’t…. at all scared about the operation. Not... not, people don’t believe me but I wasn’t scared. But it was nice for him to come and just say a few words. I know, it’s nice. And I always, I always maintain, I never blank off, I never close my mind to anything and it did me a bit of a good, to be honest. There was a network of people that come round and chat and just…it was, it was a real eye-opener. It really was and the most, the most magnificent people I’ve ever met in my life.

Several of the men we talked to mentioned the value of practical support which was offered to them by friends and relatives, including finding information (see `Information on penile cancer’), travel and shopping.

Mark is a single white male with two children. Mark works as betting office manager.

At that point when I went to see the gentleman at the other hospital, I still couldn’t get about so I had to... father drove and I had to put the back seats down and put a quilt in there and lay down in the car. So I needed... I needed a hand. I needed a hand to get in the car. I needed a hand to get out the car. And I... obviously with it being the first time that I’d been over to the other place I didn’t know where it was. Father did.

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Profile Info

Age at interview:

69

Sex:

Male

Age at diagnosis:

67

Background:

Mick is a widowed white Male and father or 2 grown up sons and 2 step daughters. Now retired, Mick used to work as a seaman. Mick currently lives on his own.

No they come down to see if I was alright and that, you know. Just shopping for me because I couldn’t get out. Because I had this bag on it was embarrassing. Because I had to keep stopping and… you know if you’re in the street you can’t just go on the side there and lift your trouser leg up and… put the brake... you know switch on and let it all go. It was embarrassing so I didn’t...That’s the only trouble, having that on. But once it’s off... did my own shopping. Went to my own way. That’s the only embarrassing thing about it, [chuckles] having that bag on your leg.

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Profile Info

Age at interview:

74

Sex:

Male

Age at diagnosis:

73

Background:

Frank is a white, widowed male. He has one grown up child. Now retired Frank used to work as a civil servant. Frank currently lives on his own.

Well family and friends, initially I am a widower, I live on my own and they were doing my shopping and caring for my needs and my daughter used to come and do some cleaning for me, because I was immobile, because every time I moved my wound was leaking. So friends and neighbours they would do shopping for me. So I was well covered with that aspect. I understand that... I’ve been... well I’ve been lead to believe that the local authority social services do help you, but in my case I’ve had no help whatsoever and I’ve... I’ve had no offer of help from the social services, which I must point out.

Many men find the emotional impact of the illness difficult to deal with but their network of family and friends were particularly supportive in this regard. They can provide comfort by going with them to consultations or they can help talk through their worries and prepare them for appointments. Illness can bring financial difficulties, with which friends and family can help.

Jim is a white male who is a self-employed accountant and lives with his partner. He has two children. His son has passed away and his daughter is training to be a nurse. Jim has become a regular church goer and was recently confirmed.

I had my sister and my daughter. My sister having been a nurse, you they did help me a lot in you preparing my mind for going in. But being a very busy professional person that did help me actually go through the days and there was… not a great case of concern on my mind and worry. It was very more sort of… pragmatic approach of well I’m going to have this operation and but you know let’s hope the consultant doesn’t take off more than he needs to. And I’ll be grateful for what’s left effectively. So that period went fairly quickly and I believe and you know it… did we... I had the operation and I was very pleased with how it everything went.

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Profile Info

Age at interview:

75

Sex:

Male

Age at diagnosis:

74

Background:

John is a British widowed male. He has one child in his 50s. Now retired, John used to work as a Teacher.

My Christian faith which is very strong. I’m a lay preacher. And somehow… like this morning I’ve just been to our prayer meeting. Then... the... they were there to support me all along and have been all along in a kind of cushion that knowing that… somehow, whatever happened, God would be there for me when I went through it. And… the promise has been kept. I’ve felt that assurance. So I won’t refer to that assurance again because it was there all the time, this assurance. Peop... friends were ringing me up, coming to see me, friends, I had over 50 cards twice in the process. So that is inherent in all of this and I still don’t know and I’ve talked to people about that and I still don’t know how people without faith can go through something like this. That they’ve got no... nothing outside of themselves to support them. Because I was supported from inside and from outside. Oh yes the services were wonderful. I mean, the, but... But you were left on your own. Well I never felt as though I was alone. Someone would call up. Someone would come and we’d have a chat, you know. And one friend has been with me all ev... he’s been going down to the hospital with me every time. Almost every time because my son had had to work and it’s difficult for him to get out. My daughter-in-law had time. She came down occasionally, being wonderful. My lady friend she’s just been there and just given me the support when needed. But it’s this feeling that that I’ve got support.

I mean it’s my family as far…we’re we’re a close unit so I think the concern is there, the love is there and the, but it was always there you know. When my daughter-in-law would ring me up and say ‘are you alright John?’ you know because I’m on my own so… and I came to live here after my wife died so I’ve been on my own so yeah I think friends and family just ring me up anyway. So yeah the friendship is stronger. Around that periphery, around that in the periphery a lot of people who I found were acquaintances I realised it’s much more than an acquaintance. The friendship is much deeper than that. I told you about the cards, you know, and the phone calls and the emails and so forth. I realised that in fact this is concern at a deeper level so… family aside, close… but it’s just continuing. But I’ve realised that there’s… I’m so blessed I’ve got so many really wonderful friends and neighbours who are prepared to help. And the couple next door they’ve left now. And I was doing something in the garden and you don’t talk to your neighbours very much, you know, and he came out and he said, ‘I’ll do that for you if you want’, you know. And yet we had we you know we talked but never very much. So I think it brings out things in people… that were there. We’re a very inherently sort of… conservative soc... group of people, we British. And I think this has made me realise that in fact yeah, you know, these people are concerned and they want to know how you are, you know.

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Profile Info

Age at interview:

74

Sex:

Male

Age at diagnosis:

73

Background:

Interview 21 is a married Asian male with two grown up children. Now retired, he used to work as an office cleaner.

What kind of support did they give you when you told them?

They gave me every support, every kind of support morally, physically because I’m not, I’m glad I don’t, I’m not working right. My son gave me new Mercedes? For drive he take the old one, give me the new one. “Enjoy your life” he said. My relatives lives in Canada and USA, he said, “Go there, I pay the ticket”. I said “ok” Before I fly because I have twice the operation, one bioscopy, one, this one. I was told they put nuclear in my body right, where if I go to the airport it will detect it… we have to…. here’s the letter to show them at the airport, no problem. Then I ask the surgeon, I said, “I want to go to Canada” he said, “If you wait a couple of weeks it’s ok”, because person who had operation sometime they got blood clot, blood clotting. So I said, “It’s alright doctor, I’ll not fly yet.”

So your family helped you enjoy your life?

Yes.

It can be helpful to talk to other patients about their experience of illness and treatment. As penile cancer is rare, men with penile cancer are unlikely to come across others with the same condition. Penile cancer patients may experience similar treatments to other patients, for example men who have experienced other cancers may also have had lymph nodes removed and catheterisation is a process commonly used when treating a range of conditions. Some of the men interviewed found the hospital wards provided a supportive environment and by speaking to other men they were able to gain and offer support to others.

Frosty is a married white male with two grown up children. He is the director of a contract flooring company.

There was only five of us in the ward, we had quite a laugh and a giggle and suchlike and so forth.

We always had lots of jokes and comments going about round the people there was one guy who came in who was very down, in fact one night he was – I could hear him sobbing and his wife and daughter and son had come in and he was worried he was going to die and this that the other, so I rung the alarm and the night nurse came and I said, “It’s not me, it’s him over there” [whispers] because he was going down the next morning for the op and I said, “I think you ought to go and have a chat to him” I’d already had my op? It was about the second time I was in… and I said, “He’s, you know, we’ve tried to cheer him up and tell him it’s all going to be alright but he’s absolutely on the floor mentally.” So anyway she went over and sat with him for about twenty minutes and he calmed down a bit and the next day the…. in the evening when the family came to visit and the son came over to thank me and said, “Oh I hear you very kindly rang and got the nurse to talk to my dad last night. He’s fine now and everything hopefully going to be alright.” I went out two days before he went out. I did ask when I came back because I had one more op to go and I came back and they said no he was fine so thank God everything was alright so.
So it sounds like it was quite a supportive environment?

Very supportive, very supportive, very, very, very supportive.

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Profile Info

Age at interview:

68

Sex:

Male

Age at diagnosis:

64

Background:

John is a married white English male with two grown up children. Now retired, John used to work for a local dairy.

I think I was the only one who was dealing with any actual surgery removal of any parts. The rest were in for rodding as they said [chuckles] being rodded and a couple of hernia patients. Apart from that we was all in the same position. We all had catheters in and being well you had to, you had to make a laugh and a joke out of it especially when you was on nil by mouth. You know you say ‘well what you having lunch today?’ and you say ‘fresh air pie’ [laughs]. But yes it was… I think they was all in the same boat really. You was all in there some were in more pain than others I think some people are more prone to feeling pain than others and perhaps I was lucky I didn’t feel… I wanted to keep on being a nuisance to the staff in anyway. At least I hope not. Yeah I... that was... that was about it.

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Profile Info

Age at interview:

60

Sex:

Male

Age at diagnosis:

58

Background:

Jim is a white male who is a self-employed accountant and lives with his partner. He has two children. His son has passed away and his daughter is training to be a nurse. Jim has become a regular church goer and was recently confirmed.

Did you find it helpful to discuss your condition with other patients?

Definitely. With the little discussion we did have I think you know that… they were certainly sympathetic because they they’d never experienced or heard of it before themselves. And… it was nice to be able to talk about it with somebody on the ward after the operation because you need to release your thoughts and feelings and I think talking to somebody you know is really important. I can’t really stress enough on that.

For men who are still in employment, balancing work life with treatments can be difficult. A supportive employer can make a big difference, allowing patients to focus their attention on getting better. For some men support from employers may not be forthcoming and they may be required to take unpaid leave, causing financial stresses (see ‘Work and finances’). Most men found that their employers told them to prioritise their recovery over work commitments and said that they should take time off during treatments.

Rodger is a white male, married with two grown up children, aged 31 and 28. He is now retired after a career working as an engineer.

Did you tell your colleagues?

No, I only told the colleague that I’ve known for years, who I work with, who was – he was my boss, so I told him. Ah…he was quite put back over it but he said, ‘All your… as far as I’m concerned you don’t come back to work till you’re physically fit.’ I went to tell the MD and he said the same. So there was no hassle at all on that side. And nobody at that time knew what the cancer was. I just said ‘I’ve got cancer, I’m going to go in the hospital and have an operation and... the outcome will be what it will be.’

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Profile Info

Age at interview:

61

Sex:

Male

Age at diagnosis:

60

Background:

Big D is a white male. He is married with 3 children, aged 35, 29 and 28. He currently works as a full time duty manager at bus company.

As far as being off work, or thoughts about me whilst I was going through the operation or whatever I think yes, it was a hundred per cent. My boss was superb. But obviously I’ve been lucky with that, I’ve been there a long time as well. When you’ve been somewhere 34 years you get to know people don’t you? [Smiles].

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Profile Info

Age at interview:

55

Sex:

Male

Age at diagnosis:

41

Background:

Les is a white married father of two grown up children. He is a full time chemical process technician at a large chemical manufacturer.

Yeh, I told yeh work, every, work had to know about it because of these treatments. I was going to be sort of going away from work every day for these treatments. And they were really good because they’d just say well, just ‘don’t bother coming in. Just you go and get your treatments done and.’ So they were quite understanding about it. The said don’t start, because it was only like going for, you know there for sort of twenty minutes while you get the shot done. But they said basically ‘don’t bother coming in, you’ve got enough on your plate.’ So they were quite understanding work, friends, family. So, sort of everybody knew about it, I thought well there’s no use hiding it, it’s out there, and I was quite surprised that, that there was this thing called penile cancer and, at the time I think I just wanted to jump on this crusade of en..., you know, enlightening people that, you know this thing exists, watch it! [laughs] yeh.